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Re: Mother's Intuition

Originally Posted by @llli*bxlgirl

Hi Susan, it's a good thing he has you. I'm sorry that the cleft turned out affect two areas. It's astonishing that he was checked after birth and it wasn't found.

Well, the birth center was dimly lit, on my request. It was honestly dark when we looked in his mouth, and in a tiny little newborn's dark mouth, I could see how it could have easily been missed. They used a big huge flashlight to look at my perineum, but there was NO way I would have let that be shone in my newborn's face to look in his mouth. The midwives both felt. I felt -- I let him suck my finger actually. The gumline (aka alveolar bone) is intact. Right behind it is intact. It's just that when you get far back in there, there's a big hole. We would have had to practically stick our fingers down his throat to find it.

And honestly, we might not have seen it at the ped's office either except that he SCREAMED when we went to look. And I've only seen it one other time since; he was fussing last night and let out a huge yell and I could see it. Ian was all excited

I hope I can get a photo of it at some point and put it up as education; most mamas would never get to see anything like this.

Originally Posted by @llli*dara

You now that happens so often, mostly for kids with just cleft of the soft palate, becasue the newborn mouth is soooo tiny, and if the cleft isnt a huge gaping hole, it can go undetected until there are issues with feeding. Also, when the cleft lip is incomplete AND the gumline is intact, the odds are the palate is intact, so they probably did a quick check, didnt feel it and went with the odds! It is great that Susan knew to persue another check and get to the real issue...WTG momma!
There is also a submucosa cleft of the soft palate which the palate appears intact upon inspection, but it only has a layer of tissue and nothing under it, so those babies will have feeding issues, and its even harder to figure out why casue the palate appears intact. OK, I am done with the education portion of this post...lol

Glad to hear Gavin is doing well

To everything. Statistically, he should have been fine since the alveolar bone was OK and the front of the palate was OK.

Seriously, I should go buy a lotto ticket. The odds against what we have happen to us are diminishingly small.

Originally Posted by @llli*verity

There can't be any question about a pump rental being medically necessary in a case like this. There just can't. They better not give you a hard time.

You would think. They will not like it if they give me a hard time.

Having the pump has already made a difference. I pumped every 2-3 hours (except this AM -- he wouldn't let me put him down when he woke up about the time I wanted to pump, so I went 5 hours) and I am now up to 1-1.5 oz and just about keeping pace with hungry boy. His weight is steady. Now to get the jaundice to go away. It's not severe -- all of mine have done it to some extent -- but still.

He's kind of decided he doesn't like the shield. I am hoping that once the OALD kicks in he might change his mind back. But I treasure every time he wants to nurse; it might be the last time.

Re: Mother's Intuition

Seriously, I should go buy a lotto ticket. The odds against what we have happen to us are diminishingly small.

Momma, you HAVE already won the lotto...just look into your beautiful boys eyes!

Oh, and I also have a whole series of cleft lip and palate pics in the pic forum. I agree it is important for ohters to see our childern PRE surgery, so when they encounter others with clefts, they will know what it is! Maybe I should post his pics in the chronic conditions forum for those who dont subscribe to the pic forum. You just gave me an idea!!

I know I am biased, but I really think that cleft babies are the cutest and I for one would LOVe to see your little man!

Mommy of 4,
3 who I watch over, 1 who watches over all of us

J- 8/20/05 pumped breastmilk for 11 months due to his cleft lip and palate!

M- 10/17/07 my precious baby lives forever in her mommys heart

M- 3/31/09 my special gift, she helps heal her mommy and daddys heart. Nursed for 4 years and 10 days, self weaned the day her baby brother was born!

Re: Mother's Intuition

A friend of mine is an L&D nurse, and she says what happened -- how we discovered Gavin has a cleft palate -- happens, even with a more prominent cleft than he has (his is a posterior incomplete unilateral cleft).

She says it's not common, but it's not unusual to have a baby who seems normal on examination after birth but just doesn't thrive like it should. Doesn't seem to nurse well. Might click like he did. Doesn't gain weight. Then someone gets in there with a light and takes a super good look while baby screams about it, and there you go. A cleft palate. Or other oral defect that interferes with nursing.

So, another good reason to follow your intuition. Doctors miss stuff, more often than we know or they care to admit. Good reason to do follow ups with your doctor when you have a newborn, and go back if something doesn't seem right.